Easter Goodies

I cannot believe I haven't blogged here since March 6th!

Not that I have nothing to say. Not at all!

Actually, it's been the opposite! There has been a little of this and a little of that happening but the biggest "happening" has been moving! We moved! Only five minutes away. Not even. But, somehow, it felt like we were moving to another state!

I started singing, "This is the move that never ends...!"

But, we're finally here and we've been here for a week now. It's a little more room to spread out for us and we're starting to make this our home.

Christian is doing really well. He's received some new equipment and toys but I'm saving that for another post.

Today I'd like to visit Easter!

We love Easter here. And I love putting together "baskets" for the kids. Christian's is always more of a challenge because I have to get really creative and find things that are fitting for him. Also, I don't know if you remember this about me but I don't like getting traditional baskets for Easter for the kids. My mom always tried to get something fun and functional so I try to do the same. Baskets just sit in the closet forever.

So this was what Christian got from the...ahem... Easter bunny!

So what was in the basket?

1. His "basket" was a sun hat with froggies on it. Totally dorky but so cute and keeps his pasty little head from burning. [Target Lawn and Garden Area]

2. Angry Birds toothbrush (This is kind of a tradition - new toothbrush for Easter. Appropriate?) [Walmart Toothbrush Area]

3. Silly Putty. Yes. THE Silly Putty. [Target Dollar Spot]

4. Wooden toy fire truck that's easily "grabbable." [Target Dollar Spot]

5. Bubbles! We've been working on pointer finger extension and we used pointer to pop bubbles today. [Target Outdoor Play Section]

6. A Hulk light up vibratey thing. [Walmart Toys Section]

7. Play dough. [Target Dollar Spot]

8. A Chocolate Bunny! [Walmart Easter Section]

This isn't a traditional chocolate bunny. It's a chocolate bunny for Christian! This means it smells like chocolate but it's soft and cuddly. Just perfect for Christian. And I got it at Walmart if you're interested.

Here's Christian with his froggy sun hat playing with his Easter toys. See how it's easy for him to grip and keep ahold of the toy truck?

"I'm tired but it's all mine!"

It was a great Easter and Christian even got a little taste of cream cheese frosting from the carrot cake. As I mentioned above, we worked on popping bubbles with his right pointer finger and he's been consistent enough that I might be able to get it on video!

I hope everyone had a wonderful Easter!

3rd Annual Christmas Gift Recap: Gift ideas for kids with special needs.

It's time for the THIRD ANNUAL WHAT DID CHRISTIAN GET FOR CHRISTMAS AND WHY IT MAKES AN AWESOME GIFT FOR OTHER KIDS WITH SPECIAL NEEDS POST!!!

But first look at our pretty Christmas tree after Santa arrived!

You can see the FIRST ANNUAL gift wrap up HERE.

And the SECOND ANNUAL gift wrap up HERE.

The purpose of these posts are to share what I get Christian for Christmas.

Why is that interesting?

Because it can be very difficult for friends, family members, and even parents to find gifts for children who have special needs and don't fit into a typical age-appropriate mold for gift giving.

So what do we do when we don't fit into a mold?

We break the mold! We find a box, and we think outside of it! Does that make sense?

Feel free to use this as your guide to gift buying!

Christian and Daddy opening this stocking.

He's a spoiled kid!

Our family has also been practicing a gift giving technique I adopted from one of my Moms' message boards years ago.

It goes like this:

1. Something you WANT.

2. Something you NEED.

3. Something to WEAR.

4. Something to READ.

It keeps Christmas organized and simple, it takes the stress out of buying and actually kind of makes it fun again.

So here is the rundown of what Christian got for Christmas. There are a ton of pics and even a special video! I could have split this into two or three posts but I'm annoying and late with this so it's all contained in one jam packed mega post! So keep reading!

WANT

It was suggested a while back that a train set would make a good gift because it can continuously run around and around. So I got a little Thomas starter train set thinking we'd adapt it with a switch. What I didn't realize is that the train, itself, is battery operated. But it kind of worked out.

Watch his hands.

This happened over and over again. And then Thomas was stuck. And it just so happened, he would swing his arm over as Thomas was coming around the bend.

Christian also got a "bonus want" because I scored this Chicken Dance Elmo from the local childrens' resale store, Rockin' Babies, for $8! We plan to adapt this with a switch and Christian really seems to like it!

NEED:

Christian's CD player next to his bed broke and we used to use it quite often. We'd play music at night or in the early morning if he wasn't sleeping. Music is very important for the brain so he needed a new CD player.

We didn't intend to get him something this cool, honestly. But did you know cheap CD players are really hard to come by these days? When I found this at a reasonable price, I jumped on it!

Is it a treasure chest? Is it the heart of Davey Jones? Nope. It's a CD player!

 

WEAR:

I've wanted to get Christian one of these shirts forever!

It's sold through 3elove and it says, "That's How I Roll."

Coolest ever.

READ:

 We ordered some pretty awesome books from Usborne. I chose a book called Noisy Diggers. Christian can help push the buttons that add noisy sound effects to the story.

Lola is "helping" Christian choose each sound.

Stocking Stuffers:

Christian got a vibratey toy, a toothbrush, pajamas, and some play dough in his stocking to share with his sister.

This whole play dough idea was a shot in the dark as far as whether Christian would like it or not. What it turned into was thirty minutes of quiet from Lola and total concentration from Christian. And noises, too.

Keep in mind, Christian has a very difficult time looking and touching at the same time. It's one or the other for him.

Take a look at the video. (And if you listen carefully over my talking, you'll hear Christian being vocal about his play dough.)

This went on for thirty minutes. He just kept coming back to the play dough. And when he was done, he withdrew his hand.

HONORABLE MENTION:

Aunt Wendy got Christian these stacking towers for Christmas. In OT we've been working on Christian knocking things over that are stacked next to him. These boxes are really light weight and can be stacked at various heights.

See, he likes them!

We can also stack them on his tray.

This is what it looks like put away.

And stacked up high.

LITTLE SISTER:

Of course, it wouldn't be a proper recap if I didn't share a fabulous picture of Lola and her new bike.

 I hope everyone had a wonderful Christmas and New Year!

2012 recap coming soon!

Bunnies

Easter has landed. And we had a good one.

With our hospital stay coming up this week, I was bound and determined to have a solid, family centered Easter! And that means continuing our family tradition of Easter baskets on Easter Sunday morning!

I thought the super soft, stuffed bunnies that are almost as big as Lola and Christian might be a little overboard. But then I thought about our impending hospital stay and how this type of life is guaranteed to have highs and lows and a lot of crap we have to deal with, especially Christian. Overboard? Ppppssshhh!

The bunnies were coming home with me.

And the Easter bunny promptly delivered the bunnies to two very deserving children.

 

 

The bunnies were a better idea than I thought! They are big enough for snuggling, Lola used hers as a blanket when she fell asleep in the living room, and it's a great tool for positioning with Christian. Bonus!

And, no, I didn't forget Gabe! He got a big kid "basket."

As I mentioned, baskets are a tradition. And I really try hard to make them as personalized as possible, including a lot of my kids'/husband's faves. You'll also notice in each basket is a toothbrush. That's a family tradition, too.

Speaking of personalization, it can be a little more challenging looking for basket goodies for Christian. But then I remembered to think simple and it was easier than I thought.

Christian got two books, one is Spongebob and one is about Oscar the Grouch. I thought it was fitting since Christian can be such a grouch and it's a textured book. He also got a squishy, rubber snake, a bright, yellow dinosaur, and new pinwheel. He got some cool sensory toys, one of which does not appear in this picture because little sister already swiped it. He also got the traditional toothbrush (it vibrates, more sensory!), and a chocolate bunny. I'm totally putting it in his blend.

But what's more sensory stimulating than that awful plastic grass?! It's not an Easter basket if you don't have messy, plastic grass that you're picking out of the carpet for months, right?!

Ahh, tradition.

I hope everyone had a wonderful Easter! We're getting ready for our very first hospital stay.

And bunny is coming with us.

2nd Annual Gift Wrap Up

Christmas is finally over. Actually, we still have our tree and lights up, so it still looks like Christmas is here. As for the gift giving and receiving...that is finally done. At least the material gifts are.

So, I decided that, just like I posted last year in this post here, I'm going to recap what Christian got for Christmas and what makes for great gifts for children with special needs.

It's the SECOND ANNUAL WHAT DID CHRISTIAN GET FOR CHRISTMAS AND WHY IT MAKES AN AWESOME GIFT FOR OTHER KIDS WITH SPECIAL NEEDS POST!!!

Long title? You all already knew I was long winded, right?

This year it was time to get Christian a new weighted blanket. We were given an awesome weighted blanket with Spongebob's face all over it from our friends Jenny and Cici while we were in the hospital. That blanket is still treasured, but Christian has grown and the little blanket only covers him from shoulder to knee.

What is a weighted blanket? It's a blanket that feels almost like a bean bag in blanket form. It's weight can range but the weight offers a calming affect on children with any kind of sensory or movement disorder. We also use ours for positioning and to combat tone.

We chose to purchase ours from SensaCalm. You can choose patterns and characters and different sizes. I chose a space theme because the colors against the black backdrop are ideal, visually speaking. And I have a thing about space and Christian and reaching for the stars and the whole, wide universe and all that stuff.

The blanket is sewn sort of like a quilt. Inside the quilt are little beads like a bean bag. These blankets also have cotton inside of the quilt pockets, which makes the blanket puffier and more like a comforter.

Below is a visual of how each pocket looks and how thick the blanket is.

In our house it has become a tradition for Santa to bring the kids:

1) Something they want.

2) Something they need.

3) Something to wear.

4. Something to read.

Plus stocking stuffers.

Christian's something to read was a Thomas the Tank Engine book. He likes to flip pages when we read books (seriously, he reaches his finger out when I help put his hand up to the page) and it's easiest when they're board books. This particular book is not only a board book, but it also has musical buttons and we can sing along with each button after turning the page.

As I mentioned in the last post, he also got a Thomas flash light. When the handle is squeezed, Thomas talks and his face lights up. Christian seems to really like this toy and he tracks it all the way from right to left consistently. (Ahem, that means he likes it.)

Mr. School Bus and Mr. Ambulance served as stocking stuffers this year. They are big and chunky and perfect for Christian to hold on to. He seems partial to the school bus. They were only a few dollars each at Walmart.

And just as a side note, I believe boys should have trucks and cars. Girls can have them, too, but we're talking about Christian and he's a three year old boy. Sometimes I underestimate his interests thinking that because his movement is infantile, he must like toys for infants and babies. Not true! I can honestly say he's bored with a lot of his baby toys and he responds right away when introduced to a more age appropriate toy. So don't ever be afraid to go age appropriate with toys. Just because his movements aren't developmentally age appropriate doesn't necessarily mean his interests aren't, as well.

This toy below I actually found after Christmas. It was in the Dollar Spot at Target. Perfect toy for special needs!

1. It's shiny and metallic. (visual)

2. It's a tambourine! So it's musical. (auditory)

3. It's easy to hold and grasp. (tactile)

4. It was $1. (Mama likes a good deal.)

Old Navy had these musical shirts for sale this year. They come with a guitar or a drum with a little speaker. Everytime the shirt is touched, it actually "plays" the instrument through the speaker. Well, I got to thinking...this is perfect for kids with special needs! Especially Christian, who moves his arms often, but keeps them close to his body. He likes to fiddle with his seat belt and g-tube and he often gets annoyed if his tray is in the way of him feeling his shirt or whatever else is going on with his shirt or stomach. Enter Electronic Drum Kit Shirt!

Size 6? And Christian is a 3T? Absolutely. Christian is cool enough to wear big kids' shirts! We chose a drum set and the shirt is scarily just his size. You can see the little speaker in the corner.

Christian also got a big koosh-like soccer ball but it's extra large so there is no way he can't hit it.

We also got a bigger musical keyboard for Christian. The only piano-like toys we had were baby toys. And they're small. So it was important Christian have a bigger keyboard with more room to play and more keys to potentially hit.

Another winner I never, ever thought of...we're taking it way back, here...a lava lamp! This came courtesy of Aunt Wendy, Uncle Alex, and Cousin Alexia. Talk about visually stimulating!

Well, not this picture. Apparently, it takes a few hours to heat up.

So in a few hours, it will be groovy, baby. Like a year round Christmas tree.

Oh, and before I go...did I mention...

...Christian and I got the mother of all gifts this year...

...it was so needed...

...and so appreciated...

...and I was so surprised...

...I think I may have danced a little jig...

...I might have done the Running Man, it's all a blur...

...WE GOT A VITAMIX!!!

Blending just got a whole lot easier around these parts.

I'm thinking this will probably be the last time I post until next year so I'll wish everyone a happy and safe New Year full of awesomeness.

Updates on Blendy-Blends

Blending has become a way of life in our household and I'm happy to say we are at 100% blends for Christian. That means he gets whole foods, blended and pushed through his tube all day, every day.

This calls for an update on our blendy-blends. That's what I call them - Blendy-blends.

What?! It's cute!

The last update I gave on blends was that Christian was at about 80% blends. Meaning he was eating a full blended diet during the day and then about 200 calories of a slow, continuous feed of formula over night. Well, Christian finally put on a few pounds, to where I was comfortable taking his over night feed away. I kept this overnight feed for the calories and I wouldn't hesitate to add it again if I needed more calories in his diet again and he wasn't tolerating enough during the day. But his body does need to rest at some point. Now that the overnight feeds have been discontinued, Christian's body confirmed that it, in deed, appreciates the rest, because now he's sleeping so much better! And for more solid blocks of time over night. I didn't even give him melatonin last night!

More discoveries about blendy-blends:

Pumpkin has been life changing as far as regularity goes, if you know what I mean. I add anywhere from a 1/2 cup to a full cup of canned pumpkin (Libby's or store brand, but 100% pumpkin). It's about 80 calories a cup and it has helped Christian's digestion like nothing I've ever seen, other than starting the blended diet in the first place. No more blow outs, Miralax! We don't need ya!

We tried coconut milk in the box from the health food section of the store. It was suggested by another smart, blending, Mommy friend of mine to try the coconut milk in the can from the Asian food section. It had almost triple the calorie count for about 1/3 the volume. That's like calorie gold. It also has a high iron count. Well, that would seem to be great, right? Apparently, the iron was a little too high for Christian and it constipated him! Coconut milk is supposed to do the opposite! Google it. I swear, it will say people use coconut milk to fight constipation. Not for Christian. It caused it. So we've moved away from the coconut milk, unfortunately.

As far a dairy goes, we don't use a lot of it, but we dabble. Christian will get two scrambled eggs once a week or so. He also gets that yummy Dannon Greek yogurt that I want to steal every time I smell it. I will also mix a little milk with Christian's oatmeal, instead of water just because that's what I do when I eat oatmeal and it tastes better, so I'm doing the same for Christian. I'm just trained that way.

Oh yeah, forgot to mention, my son is turning into a little vegetarian (the kind that eats eggs, see above). It seems that Christian has a hard time with meats I call heavy, like pork chops and beef. He does a lot better with the already blended version found in baby food. So that's what I'm sticking with. He seems to get a lot more digestion stress, upset tummy, and acid reflux when he has heavy meats and starchy food like stuffing or potatoes. He can pretty much handle all fruits I've given him - oranges, apples, bananas, strawberries, tomatoes, and blueberries. No problem.

Fatteners I use to increase calories content are honey for the fruit blends and olive oil for the veggie mixes. It's an easy 100-200 calorie increase. Peanut butter is a great calorie hike, but we tried it early on and it was a little too heavy and rich for Christian and I distinctly remember what peanut butter smells like coming back up. Good times.

I think everyone has a "safe" or "go to" blend. Or what they would call a base blend. Ours is banana, avocado, and apple juice. We can add fruit, grain, or yogurt mixture to it and Christian can pretty much tolerate it.

We use baby food. Why not? It's already blended and has the calorie count right there. Easy! The best baby food mix in I've found is from Beech Nut. They have super high calorie counts on their fruit mixtures. And they're all natural, no added sugar.

By the way, the worrying and fretting I did about Christian's vomiting was short lived. He tends to cycle into vomiting when he's sick, and getting better can take longer for Christian. For me, it still feels like a failure every time he vomits because he sometimes just does it out of the blue and I feel like I can't figure it out. That being said, he's not vomiting right now, and one of the best things about the blended diet is that if all of the sudden Christian is vomiting, we can eliminate a food, we can play around with blends, add and subtract ingredients, until it works. It's amazing.

Overall, the decision to make the transition to the blended diet has been one of the best decisions for Christian we've made. He looks better, he's more alert, his digestion is better, his hair and nails grow like weeds, his skin looks better, he has less gas, and, overall, less reflux.

When we started, I wasn't sure it would work for us so I just bought a Ninja blender on sale with the thought that if we stuck with the blending, I'd head up to the big leagues and purchase the mother of all blenders...a Vitamix. The time has come. So in a few months, after the Christmas crazies and saving a little, we'll take the plunge and buy one of those suckers. The Ninja has done us well. It's karate chopped its way through most of what we have fed it. But it's time to graduate.

Blendy-blends are here to stay. Blendy-blends...write that down. Say it. It's fun!

(Reposting on the Cooking for Christian page you can find on the right sidebar with sample recipes!)

The Secret

Sometimes I feel like I'm on a hunt for some sort of secret. Like I know an answer exists to help Christian's tone. I know an answer exists to stop his seizures. I know an answer exists to help him laugh and express himself. I feel like an answer exists, I'm just not privy to it. So I have to hunt and calculate and eliminate and guess and still...I feel like there is a secret being kept from me and sometimes I have no idea how to figure it out.

Christian vomiting is no exception. It's perhaps one of the biggest secrets that I often feel so close to unlocking.

His vomiting comes in cycles. He'll do amazingly well for months. And then out of no where, throwing up is back. Usually, it's brought on by some kind of unsettling in his system. That's pretty obvious, but it usually coincides with illness, colds, teething - again, another secret.

The blended diet has been awesome for Christian, but when Christian got a cold a few weeks ago, he was what I like to call "juicy." He had a lot of mucous in his throat and nose. I've mentioned before that the doctors initially said he had no existing gag or cough reflex, hence the trache placement after his accident. The irony of the situation is that now Christian has a hypersensitive gag! This means that more mucous in the throat leads to gagging. Cut to Christian throwing up his dinner.

I could be having the best day of my life. If he throws up, my day is crap. It flips upside down in a minute. Know why? Because I take it personally. I feel like I'm personally responsible for not figuring out why it's happening. And if I know why it's happening, I'm personally responsible for not figuring out how to make it stop happening. It's all a secret.

Christian has been vomiting again due to some leftover juiciness from the sickies he had a few weeks ago. See I know why, I just don't know the secret to making it go away short of waiting it out. Which, by the way, after all the wracking my brain to find a solution, is what will be the secret. Waiting.

It still doesn't make it fun. Last night he threw up. He had a tough time in the evening holding his food down. Day finished. I finally started venting to my husband. This is how it went...

I feel like it's a big secret!

And I don't know the answer!

I try everything and it still comes back!

What iiiiis it?! Just somebody tell me so I can do it!

Yeah, that was me. And I believe I've vented the same questions for seizures, the keto diet, fill in the blank.

He had very simple words: Maybe we aren't meant to figure it out. Brain injury has a lot of mysteries. Maybe we're not meant to figure out those mysteries yet. Christian is doing well, otherwise. We're doing the best we know how. Well, at least you are. I just watch.

Isn't he a funny one?

Is that the secret? Not trying to figure it out? Some parents decide never to question the doctors or specialists. They just follow the direction on the prescription bottle. Are they on to something? Are they the ones who have it right?

I don't know. Every family does what is best for them. But I'm a big believer that when we know better, we do better. I have this incessant need to understand. Because then I can move forward with a plan. But if I don't understand I can't move forward. And, believe me, I've tried my hardest to follow the whole lean not on my own understanding thing. But for a girl who has a need to understand things, I'm not really great at following the aforementioned instructions. And there are only so many times I can repeat that line about understand before it becomes white noise.

Maybe it is as simple as remembering I'm doing the best I know how.

The good news is that even though Christian had a cold and even though he's been throwing up a little bit, he has gained a whole pound and a half. He's finally at the weight I'm comfortable with - a tall 31.5 pounds. Speaking of secrets, I finally found the secret to getting Christian to gain weight. (I added in extra feeds by making sure Christian eats more frequently during the day, just in case you were wondering.)

This is a good secret to have uncovered because being that Christian is on the blended diet, I am directly responsible for all of his nutrient and calorie intake. So, of course, if my child isn't gaining weight I feel responsible. Just like any other parent would for their child, whether they were eating by mouth or through a tube. Gaining 1.5 pounds is parental success for me.

Despite this recent frustration, I know it will pass soon enough. And looking back to this time last year, Christian is doing so much better now than he was then, which is a testament to how much we have gone through, changed, tweeked, and altered to get him to where he is now.

We've done and are still trying to do the best we can. Simple. No unlocking of secrets required.

The GI Interrogation.

We visited the GI doctor the other day. We hadn't paid him a visit in a good six months. Not since Christian was on the keto diet. And not since we transitioned to a blended diet through his tube.

I think that appointment can be shelved away in category: Sucky Appointments That Make Me Feel Like Crap.

I had to take a few days to sit with my thoughts about the whole thing. I'm still wondering about it. I'm still wondering if we should ever go back there again.

When we first visited this doctor, he had all the answers and really helped us figure out how to get Christian to stop throwing up. He's very smart and it's evident his brain his working faster than he can talk. And he talks fast. But over the next few appointments he started to take on a condescending, questioning (disguised as a voice of devil's advocate) tone, and it really started to irritate me. But I chalked it up to him just being a doctor and using his doctor voice.

A while back I mentioned to him that I'd like to explore a blended diet through the tube. I don't remember exactly what he said but it was definitely not supportive. He shut the conversation down quickly. And if I remember anything I do remember him saying that "formula is a perfectly acceptable form of nutrition for g-tube fed children."

Rehearse much? Jeez, read that off the back of the can, Doctor?

Anyway, we visited the GI doctor on Monday. We needed to renew a prescription and I was also interested in running some blood tests to make sure Christian was getting everything he needed. I also wanted to keep the GI doctor in the loop since so much had changed.

As I mentioned, I'm still trying to sort some of the conversation out, but these are some of the examples of what the doctor said and my corresponding thoughts:

*I will also be referring to Group A. This group is a renowned therapy group specializing in feeding therapy and tube feeding. Our OT is from Group A, which is not their real name, but due to the nature of some of the comments from the doctor, I don't know if I should mention any names.

Me: "Christian is now on a blended diet."
Dr.: "And why did you decide to do that?"
Me: "I was always interested in whole foods for Christian, but he wasn't holding formula down so I decided to go for it because it was at least staying down."
Dr.: "You know there are other things we can do for that. So besides it helping the vomiting, why else would you choose to give him a blended diet? Are you with Group A*?"
Me: "Our OT is from Group A."
Dr.: "That's what I thought. Nobody in this area or surrounding areas decides to do a blended diet except for people working with Group A."

************************************

Dr.: "He looks orange. Does he look orange to you?"
Me: "No." (Confused.)
Dr.: "Are you sure? He looks orange to me. Are you feeding him squash?"
Me: "Not lately. Are you sure it's not me? I wear self tanner and it makes me orange. Are you sure I'm not reflecting off of him?" (I promise I actually said these words.)
Dr.: "No. It's him. He looks orange. Watch, hold your arm up to his. You don't see it?"
(No, I don't see it, weirdo.)

*********************************

Dr.: "So why else would you decide to give him a blended diet."
(Didn't I just answer this question?)
Me:. "He's always had problems with formula, since he started it right after the accident."
Dr.: "Well, his weight hasn't increased by much since last time I saw him. Real food can not reach the calorie content formula has. Real food at it's highest calorie content is only 2/3 of each calorie in formula."
(This is where it gets weird. When Christian was on formula he was gaining too much weight and dr. said something about him being 33 pounds. Then he said something about him loosing weight. But he said Christian shouldn't have gained so much weight! And we saw him six months ago! Was he supposed to have gain a bunch of weight since then? He weighs 29.75 lbs. now. And is right on the curve, by the way.)
Dr.: "The body craves what it is lacking and since Christian can't tell us what he craves, how will you know what to give him?"
(Lola has never told me what she 'craves.' And, p.s., I crave sugar all the time and I highly doubt I'm deficient in sugar because I eat it all the time.)

*********************************

Me: "I just want to see him one to two pounds heavier."
Dr.: "Why?"
Me: "Because I'm his mom and I want to see him robust and solid."
Dr.: "But he's not a baby anymore. Four to six year olds are the skinniest they'll ever be in their life. So it's normal for him to look skinny."
(Weren't you just concerned he wasn't gaining enough weight fast enough?")

**********************************

Me: "I give him kale, apple juice, avocado, olive oil."
Dr.: "Now olive oil can slow things down in the digestive track."
Me: "Actually, he's never been more regular. And it was over night after we started adding blends."
Dr.: "Oh was there a regularity a problem before?"
(No, we just have a prescription of Miralax in his chart for fun. Did you read his chart?)

*************************************

Dr.: "Well it sounds like you are doing a great job at getting him what he needs. If anything I'd be worried you're giving him too much of something...this isn't taking over your whole life, is it?"
Me: "No! I love cooking for him. It feels like he's more a part of the family. It feels less like a medical procedure, like I'm just plugging him in and walking away."
Dr.: "Yup, that's Group A! Those are their partying words!"
(Swear to God, he said 'partying words.' I think he meant parting words. But he seemed pissed off while he said it.)

And then he walked out of the room and I didn't see him again.

I felt interrogated.

There were a lot more little comments he made. But it was like he was insinuating that Group A was swooping down on poor, innocent, formula feeding families - happy in their ways - and pushing evil whole foods on us. And we had no choice but to give our kids a blended diet, because Group A pushed it on us!

That is not the case!!! I have been interested in it since day 1! I asked my OT about it and she gave me a book to read written by the founder of Group A. And then she left the decision up to me. In fact, I made the decision on my own and made the transition. I've asked for suggestions from the OT, but she has never, ever, ever, EVER pushed a blended diet on us. I've also sought out the bulk of blended diet information from...shocker...OTHER PARENTS!

I swear I have never met so much resistance. Even the doctor's own assistant was intrigued by our choice to go blended. Even his assistant! Christian's pediatrician is in total support and even said it's better for him. So why the attitude? Why the lack of respect for our choices? Why be so condescending?

And just because Christian is tube fed, does that make him unworthy of whole foods? Why is this not possible in this doctor's realm of thinking? Why isn't this a practical choice? And why isn't that choice respected?

I'm not mad about this, if that's how I come off. I feel worried. Worried for myself and worried for other families. What if this guy has a bone to pick with Group A and wants to make an example by taking some kind of action? What if he doesn't think we're nourishing our child? I'm confident we are but what if he's not. Then what?

So talk about an interrogation. First he's gaining too much weight, then he's loosing weight too fast, then he hasn't gained enough in the last six months, then maybe he should be skinny, then he looks orange, then maybe he's not getting enough calories, but then maybe he's getting too much of something, then it's all Group A's fault.

Can you say mindf**k?

What's Christian Eating?

Back in June we embarked on another journey to blended diet land. I must admit that in the beginning I was unsure, overwhelmed, a little lost, but I knew one thing...I just wanted Christian to be healthy. And no vomiting.

Just a quick synopsis of what led to the decision to go blended: Christian threw up from the first formula feed he had after his accident, sometimes multiple times a day, but every day without fail. Then we changed to an elemental formula that was easier to digest. But the vomiting and reflux persisted for months. We finally visited our first GI doctor who gave us the miracle of Renitadine (an acid reflux med) and that cured all, it seemed, for about a year. Then we switched to the keto diet, which didn't give us any stomach issues with vomiting but did give Christian a lot of constipation. As soon as he came off of the keto diet he started throwing up again. And then it got worse and I couldn't understand why! It was the most frustrating thing! How could something that used to work just no longer work anymore? We were using the same brand of formula, the same medicine for reflux, the same volume, what the hell?!?!

Enter the blended diet.

I first started to introduce it when Christian just wasn't holding feeds. Or he would throw up at least one a day in a large volume. In anticipation of starting the blended diet soon I had purchased a Ninja chopper/blender. So I had that on hand to blend up some banana and avocado. I really didn't know what I was doing. I just tried to figure - what would I feed him if he were sitting down at the table right now asking for food? He held it down better than the formula because, at the very least, the blends were thicker.

And the blending commenced.

I've learned a lot about calories, foods, allergies, and combinations. See, it's all well and good to think - Oh, I'll just give him this! It's 300 calories. But Christian has issues with volume and speed. This means that he can't tolerate large amounts of food pushed into his stomach at once. That is a sure fire recipe for it coming out Exorcist style all over you. So if 300 calories makes a blend that is 300mL and Christian can only tolerate half that in one feeding, well that's only 150 calories. And we're shooting for 1000 a day! This is where it gets hard and this is where we have to get creative. In the beginning of our blended journey he actually lost 3 pounds and I freaked out thinking I was doing a horrible job and what was I thinking and why am I doing this.

But we finally got into a groove. The most immediate benefits were his digestion and constipation. He went from constipation + Miralax = earth shattering, spackled blow outs every few days that were so vile we needed a hazmat suit to change it, to consistent regularity. They don't smell nearly as bad and they come every day without fail without Miralax. They don't hurt him, he doesn't strain, and he's a lot more comfortable. By the way, I have never talked about poop in my life as a conversation topic as much as I have in the last few months, just for the record.

Other benefits are that he's a lot more alert, he gets a variety of foods, it feels like he's eating what we eat and it feels less medical. Benefits also extend to me - the Mommy! One of my favorite things about Christian's new diet is that I get to prepare it and I take a lot of joy in that. It does take work, it does take a lot of preparation, but I do it lovingly counting calories and blending knowing that I'm cooking for my son.

We are not perfect at this. We are not purists. So if we have something for dinner that is well rounded, it goes in the blender for Christian. I also have some quirks I've developed like I make two blends every day. Here are examples of Christian's menu:

Fruit/Grain/Yogurt Blend:
1 Banana
1 Avocado
1 Greek Yogurt
1 cup of Cheerios
8 oz. apple juice
1 jar of baby food (peaches, apple cinnamon oatmeal, or something high calorie)
Frozen strawberries or blueberries
1 Multivitamin
...and some other stuff

Veggie/Meat/Grain Blend:
1 Bushel of Kale or Collard Greens
Spinach
1 jar of baby food (high calorie meats)
1 jar of baby food (squash or sweet potato)
8 oz. of apple juice
Apple sauce
1 boiled chicken breast
1 cup of whole wheat pasta
2 tbl. of olive oil (for calories)
1 multivitamin
1 scoop of protein
...and some other stuff

I make two blends because I just don't like the idea of blending everything together. Nobody told me this was bad and if I can bring myself to do it, it won't be so hard to think of things to make these two blends 1000 calories each. It's just a quirk I have. Fruit and meat blended together? Gross! Some of the fruit blends I make him I'd eat myself, they're so tasty! I should get over it, because, like I said, it would be easier to make one blend a day. But right now, we're doing two.

The examples I provided above are by no means absolute. We trade out. I've added peanut butter and Nutella to boost calories but it seems he has tummy troubles when I add these so I don't anymore. I've added Nutrigrain bars, apple sauce, graham crackers, and homemade mac and cheese. I use apple juice because it's great for constipation. The dietitian isn't a fan because of the sugar but it also has calories so for now we're sticking to it. It's harder to find calories when you can't add a lot of dairy. And another thing, I'm not really that comfortable with cooking meats for his blends other than boiling chicken breast. So for now we do baby food meats, which are already blended and have the calorie count right there on the jar.

We found out Christian was having trouble with dairy after I took him off of it for a week to see what would happen. Nothing happened when I took him off the dairy but when I put him back on it, he started having some diarrhea. The pediatrician suggested adding Greek Yogurt (which is super delicious, by the way, and I think Christian should share this with me) so we do that and we also sometimes add scrambled eggs and instant breakfast powder for extra calories.

With us, it's all about the calories! That's why we use olive oil, too. Since Christian doesn't like a lot of volume, we have to pack as much into each blend as possible. The bigger the blend, the more calories we have to fit into it. And each blend is loosely calculated to 1000 calories each, which gives us 2000 calories for two to three days.

Because I'm paranoid about calories, I also added in 200 calories on a slow feed over night of his old formula. This gives me piece of mind that he's won't be seriously hungry when he wakes up. It also gives me piece of mind that he's getting that extra oomph of calories at the end of the day.

Good things for Christian's body - Kale and collard greens and banana and avocado. Both banana and avocado have a good amount of calories. Avocado is like calorie gold. Kale loves Christian's digestive system and Christian's digestive system loves kale. Do I ever eat it? Hell no. But it's great for Christian, so it's a regular on our menu. I just steam up a whole bushel and it all goes in.

So that's what Christian's menu looks like. It's a work in progress and I'm always experimenting with new things and new ways of giving him food. We don't use a pump for his blends because they're too thick and his stupid pump won't budge. So we bolus the blends (push the food in by tube with a large syringe). But we have to do it slowly. I leave him hooked up to a tube with the syringe at the end with food inside. Then I leave him to sit and play with a toy or watch the window blinds (he loves that) and every time I walk by I push a little in. It works for him. And since I've been doing it like this - no reflux or throw ups.

There you have it. Christian eats food through his tube. What I've explained works for us and us only through trial and error. I tried many times to follow what others were doing and when it wouldn't work for Christian I'd get really frustrated because that's how it's SUPPOSED to be! I had to ditch that attitude and go with what works. 80% blends is good enough for now with the 20% formula over night easing my calorie stress.

Just for your information, Christian is doing amazingly well! I seriously thought he would be out of it for days but he is alert, moving around, his incisions are looking good, and I'm excited about it.

We got a couple donations so thank you - you know who you are! We are so grateful! Please consider donating to help Christian and his friends participate in their first race!

Donate here:
http://www.active.com/donate/myteamtriumph/christiansjourney

Happy Blending!

Feeding Him

I will readily admit that tube feeding is one of the subjects I know the least about.

When we left the hospital after Christian first had his feeding tube placed, we were just struggling to keep food in him. Nobody ever sat me down and instructed me on how exactly a feeding pump worked. They just sent us home and let us fly. I didn't even know what a bolus was or how to do it. I didn't know (and still kind of don't) about gravity feeds and I have no idea what three quarters of the functions on the feeding pump do. Up until recently, I didn't even know what the measurements on his Mic-key button meant.

What I do know is that as soon as formula was introduced in large quantities to my previously exclusively breastfed child, he threw up. And he threw up a lot. We had issues right away. In fact, Christian threw up every day, sometimes multiple times a day, for about eleven straight months. Over the last almost two years, we've fiddled and fumbled with rates and volumes until he wasn't throwing up as much. We also discovered Renitadine, an acid reflux medication that made a huge difference and pretty much stopped the vomiting right away for the most part. We still had spit ups but nothing near the projectile - four extra changes of clothes a day - kind of stuff.

I think it's fair to say that I've been half way winging it the entire time and any advise given on the subject I cling to, but, honestly, it's like someone speaking foreign language to me. I've been briefly instructed in it, I know it's important, but I vaguely understand it.

I had heard the phrase "blended diet" thrown around a couple times. And it really scared me. It sounded out of the question, unreachable, just too much to add to load.

But I always wondered - What would I feed him if he was just a normal three year old? Why can't I feed him that?

After our keto experience, the mixing, measuring, and weighing, I started thinking more about my son's diet. And again - why couldn't I just feed him what I was feeding Lola? Only blended and through a tube?

So I really wanted to make plans to start adding whole foods to Christian's diet after we were comfortably weaned off keto.

And you know things can never get complacent or boring around here, right?

I made the first blend and it was...dare I say...exciting? Yes! It's been exciting! And I thought it was going to be more difficult and more time consuming and it's turned out to be the opposite. It's actually fun to put meals together - I've added cheerios, mac and cheese...things I would feed him anyway.

Now just to throw another wrench into things, right before we tried blended food, Christian started throwing up again for no apparent reason. Couldn't figure it out. And, frankly, I was tired of figuring things out. So I gave him real food in a blender to see if he would hold it down because everything was coming up. And you know what - he did.

We've been taking it slow and we're still in transition but I really hope it works out. I feel more like I'm feeding my three year old rather than plugging him into his pump and walking away. I can't explain the feeling of finding a way to be his mommy that feels more natural and instinctive.

So far, I'm not-so-secretly loving this.

And I'm loving this...

 ...and this...

 ...and this...

 ...and this...

...and this...

 And this one, too!